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Ask the Experts: How has HIV Testing and Awareness Progressed?

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Today, there are many treatments and preventions available for HIV. Data reveals that, across the US, there has been a 39% increase in the use of Pre-Exposure Prophylaxis (PrEP) from 2017 to 2018. In light of HIV Vaccine Awareness and HIV Testing Day, we asked EVP and Chief Scientific Officer Kent Thoelke about his experiences in HIV research and his insights about preventative measures.

How did you end up working in the HIV research space? What was it like?

Essentially, I began taking care of patients and moved into research by way of companies that I worked for. I started working with HIV patients in a hospice center in the mid-90s, but that wasn't so much about research. My focus there was primarily just helping AIDS patients. We helped AIDS patients die with dignity. Shortly after that, I ended up working for a company that focused on HIV treatments, and then another company doing work in the CXCR4 and CCR5 space. It’s important to note that all of this happened in the late 90s, so with the exception of AZT there weren’t many treatments available.

There was a ton of research going on, but it took several years for us to even find a test to determine whether or not an individual had HIV. Back in the early days of the HIV pandemic we were essentially operating in the dark. We didn't know what caused the disease, it barely had a name—and for sure we had no idea how to treat or cure it then. Back then, all we knew was there was a disease that was killing gay men—and that the virus was 100% lethal. What people forget is that it took us almost 4 years to identify the HIV virus as the cause of AIDS and another year before a test to detect it was approved. We were still in the early days of understanding the pathway and what drugs would actually target to inhibit HIV replication. We weren't even thinking about the vaccine then—we were just trying to think of drugs to keep people alive and inhibit the ability of the virus to infect cells. The bulk of my early career researchers were really just trying to understand the disease and the mechanism of action, let alone how to actually treat it.

Can you recall a specific moment or story that impacted you and shifted your perspective on HIV research?

When I worked at the hospice center, the country was in the middle of the HIV/AIDS pandemic. We didn't know what caused it, we didn't know how to treat it, and we didn't know how to keep people from dying. Every day I went into work, people were dying. It’s hard to forget the number of people that were taken to the funeral home—and that it happened every single day.

It was unbelievable to see the volume of death that happened every day, with absolutely no horizon in sight to stop the spread or even treat patients. We did have some early options with azidothymidine (AZT), but it didn't seem to help—and it came with significant toxicity as well.

These weren't just people dying a “normal” death. They wasted away in front of you. You’d see healthy people that, within months, would weigh 80 or 90 pounds, skin and bones. It was terrible.

I particularly remember one patient. All of the staff wore protective measures like gloves and masks since we didn’t really know what caused the disease or how it spread. The patient had to go to the restroom urgently. We rushed to get him into the restroom because he could barely move on his own, but he didn't make it and had an accident. I didn't have time to put my gloves on, so I was just holding him. He was crying and I remember telling him that there was nothing to be embarrassed about, that it wasn’t his fault. But what was really poignant was that he wasn't crying because he was embarrassed about what happened—he was crying because I was the first person who had physically touched him without gloves in months.

Nobody wanted to touch him with their bare hands because everyone was so concerned about contracting HIV and AIDS without even knowing how it spread. Not only did these patients have this horrible disease, they lacked any human touch and they died without any human touch. The impact on that moment has stayed with me throughout my career—it taught me the importance of balancing compassion with science and healthcare.

What do you think is the biggest concern for people living with HIV today?

We have many novel medications that allow people to live much longer than we ever imagined. But what are the long-term effects of some of these drugs on patients’ organs? Nobody ever anticipated HIV and AIDS patients to go on to live full, normal, healthy lives.

Your body takes an impact from being on meds chronically for 20 or 30 years. They're all processed by your kidneys and liver, which means a significant impact on all of your body systems. We’re currently trying to understand the impact on chronic disease management versus an acute disease. Ideally, we would like to have a vaccine to prevent the spread of HIV. A vaccine would certainly have an incredible impact on underserved parts of the globe, where people lack access to drugs such as PrEP.

The advent of PrEP and the ability to use a single pill a day is remarkable. That basically stops the ability for anybody to be infected with virus. Nobody ever imagined that as we learned more and more about the disease, we would find an undetectable, untransmissible component as a method of prevention as well. If we can use the HIV medication to decrease the viral load in your system to an undetectable level, that makes it virtually impossible for you to actually transmit the disease to somebody else.

Ideally, long-acting formulations of the world’s PrEP medications will be super valuable just from a compliance perspective. We certainly need more education around the fact that if we can keep your viral load undetectable, you can't transmit the disease.

There’s still a lot of work to do. It took several years to get insurance companies and government to fund the availability and use a PrEP for HIV. Plus, there's still stigma associated with that we're trying to get over.

There are no preventative vaccines or therapeutic vaccines for HIV yet. Can you tell us about how clinical research comes into play?

Vaccine work has been going on for a long time with HIV. It's a complicated virus. We’re 25-30 years in and we still don't have a vaccine. It’s frustrating because the whole world is looking at COVID-19 as a massive pandemic, but it fails in comparison to the number of people that have died of HIV and AIDS. The fact that we’ve been able to muster resources to potentially create a vaccine for COVID within months is incredible, but it’s also frustrating because it seems to be societally and politically motivated. No one paid as much attention in the early days to the HIV/AIDS pandemic as they have to COVID. Certainly no one advocated for potential treatments in 8 weeks as we have with COVID. Sadly, the fact that the majority of the people dying en masse in the early days were gay men impacted the urgency with which public health and government agencies as well as many pharma companies responded.

If it had not been for a few key pharma/biotech companies who really stepped up and had it not been for patient advocacy groups like ACT-UP and the use of political pressure from supportive groups to push for novel pathways for drug approval, I'm not sure we would have the drugs we do today. We have lived through a pandemic before, it just wasn't a coronavirus—it was an unidentifiable virus that after many years we would come to know as HIV.

We have lived through a pandemic before, it just wasn't a coronavirus—it was an unidentifiable virus that after many years we would come to know as HIV.

Kent Thoelke, Chief Scientific Officer

The theme this year for National HIV Testing Day is “Doing It My Way”—people make testing a part of their lives, on their terms, in their own way. Why is testing so important in both prevention and the early diagnosis of HIV?

HIV testing is complicated and generational—it’s more complex by ethnic and social background and diversity issues. Before we could test HIV, people were afraid to get tested. Every gay man who was alive through the HIV epidemic has lived through testing. It wasn’t a pleasant process. It was super stressful, and everybody thought they had it.

The ability to minimize the spread of HIV is really true prevention. The only way we can do that is to understand if people are HIV negative or positive. Understanding that you're positive is the most critical part to stopping the transmission of the disease and seeking long-term health active treatment.

Frequent testing for people that are on PrEP is also important. If you’re positive and you don't know it, and you go on PrEP you could create some sort of mutation in the HIV you have. Then you lose one set of valuable drugs that can be used to treat you.

Those are just a few reasons why HIV testing is critical. The most important is public health. If you’re armed with information that lets you know if you're positive, then you can figure out what your next treatment steps will be. If you're negative, it allows you to make sure that you are utilizing PrEP in a responsible manner.